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Insomnia/Fibro??

jonesclairem profile image
8 Replies

Hi all

I have never written anything on this site before but see a lot of help and support offered

As you all know, we suffer in different ways and hard to actually pin point what is fibromyalgia and what is another complaint. I find it quite hard sometimes to say "this is my Fibro" OR is it something intirely different!

I can honestly say I have suffered on and off since I was 11yrs after a massive viral infection then peaked at 17/18yrs. It took 7yrs of consultant appointment and long stays in hospital before they would 'label' me, in the end my team of consultants narrowed my condition to Fibromyalgia not without a lot of heartache on the way for myself and family.

I manage my condition very well and control the flares with pain killers and anti inflammatory. Over the last 2 years my dose of amitriptyline has risen to 100mg every night. I now wake up between 2 and 5 times a night. Sometimes on regular one hour intervals. I used to b completely the opposite; sleeping all day and night. However now I cannot sleep without waking up. I always go back to sleep shortly after then to wake up again. It's as if a lightbulb comes on and I am sitting up in bed wide awake. Does anyone suffer like this?? I don't think I have had a full undisturbed night sleep in months. I no longer sleep in the day.

Any thoughts or experiences on this matter would b hugely appreciated!!

Kind regards

Claire x

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jonesclairem
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8 Replies
Extremelygrumpy profile image
Extremelygrumpy

Perhaps your body has become too used to the amatryptaline have you been to see your gp and see if they can give you an alternative, I am on 75mg of dosulepin at night been on it years and I sleep well with only the odd night of wakefulness I tried coming of it and immediately stopped sleeping so I went back. Apparently according to a liver biopsy I had my liver doesn't metabolise alcohol or meds well so I only need low doses and don't build up a tolerance.... Finally something in my favour

jonesclairem profile image
jonesclairem

Thank you! I have suspected it could be the amitriptyline rather than the Fibro. I would like to know whether people are having these restless nights without taking amiptriptyline?? Been on them so long it would b a strain to change, apart from my sleeping pattern it controls the condition quite well! Always feel like I can sleep 24 hours but what else is new, ha!

Kind regards

Claire x

Ginsing profile image
Ginsing

I have gradually got used to a strange sleep pattern - it probably is enough for me , I sleep from 11.00 till 2.00 then wake to sleep intermitantly and when the pain overcomes me I get up any where between 5am and 7am during the day I have what I think of as a power nap at about 1.30 for an hour and maybe a doze at 4.30- 500pm so all in all 5/6 hours but all over the place. Doase it matter well no I rest when I need it I hasve totally given up on a full nights sleep. xgins

jonesclairem profile image
jonesclairem

Thanks Gins, a full night sleep maybe a thing of the past! May I ask whether you take amitriptyline at night?

Ozzygirl64 profile image
Ozzygirl64

Yup, been there, and then there are the nights where I get no sleep at all, ussed to it now. But the hourly wake up is so annyoing when it starts and that was happening when I was not on meds. I hope you get it sorted soon. When it gets bad for me I take a flask of camomile tea up with me, sometimes it helps xxxxx

NWG23 profile image
NWG23

I found I slept like a log on amitriptyline but then my body got used to it and I started waking up too often so had to up the dose. After 7 years on it I'd had enough of all the side effects and was weaned off it with support from a nutritionist. Now I rely on herbal supplements but its all trial and error. I don't sleep really well anymore but my GP gave me a sleeping pill which I take only 2 3 times a week just to give me some respite. I'm ok with this approach for the moment but do miss normal sleep.

jonesclairem profile image
jonesclairem in reply to NWG23

My GP wanted to lower my 100mg a night of amitriptyline but as my flares are few and far between at the moment I don't want any of my medication changed! Xx

jonesclairem profile image
jonesclairem

So I can put this down to my Fibro and not the amitriptyline. It's awful the hourly wake up, drained all the time, it's as if I am running on auto pilot. Maybe I can go back to my GP and ask if there is anything he can recommend also. I will definitely try the camomile tea tonight because my mum drinks it...what I would give to have a full nights sleep?? Xx

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